Delayed puberty is common among young men with CF, but working with your CF care team to ensure you get good nutrition can help encourage healthy development and growth.
People with cystic fibrosis continue to live longer and healthier lives, and the Patient Registry data support this general trend. To understand what this means for our community, however, it is important to understand how these numbers are calculated and what they represent.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
Learning that your baby has cystic fibrosis may come as a shock, especially if you do not have a family history of the disease, but you are not alone.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.
Starting solid foods is very important for the development and health of babies with cystic fibrosis.
At this age, you will want to start serving high-calorie finger foods and gradually boost calories with safe solid foods. It is important to create a routine and set time limits at mealtime.
Children with cystic fibrosis ages 3 to 7 learn by watching their family, parents, teachers, and friends. They like to be independent but need limits and structure. Have planned meals and snacks.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
To help ensure your child's needs are being met at school, you may consider requesting an Individualized Education Program (IEP) or a 504 plan.